A Change of Berth
After yesterday shock Mum and I both had a pretty disturbed nights sleep (go figure). However, what sleep we did get seemed to help a bit and we were feeling a bit more brighter this morning.
This was helped by the fact that we had a call from Dad’s doctor (Chris) to go over with me what he had told Mum yesterday. Also he informed us that he had spoken to Dad and that he was now aware of what his condition was like. Dad knowing lifted a fair amount of weight of Mum’s shoulders, because, as she said to me, she didn’t think she could face Dad having to sit on the information if he hadn’t been told.
Chris advised me that while there don’t appear to be any NEW tumours the ones that are there have not halted their growth despite the treatments. The tumour that is the deepest in left hemisphere right near the ‘brain crack’ or septum pellucidum to be accurate (I *think*) has had a significant increase and has now started to infiltrate the right hemisphere of Dad’s brain. God only knows what functionality issues that might cause, and it’s something that we are going to talk to Chris about tomorrow.
Chris did say that there was another treatment they could try, it was “Good” in his words… “But not fantastic”… it also would cost about $20,000 because it is still a bit experimental and not covered by Medicare. I told Chris ultimately what both Mum and Dad told him. Mum and Dad’s wishes when it comes to things like resuscitation and other ‘life extending’ treatments is both the same… neither of my folks want treatment for the sake of time… There are no guarantees… this particular type of tumour IS terminal, so what’s the point of putting Dad thorough potentially wasted/painful treatments with unknown side effects for the sake of a few weeks/months more? Chris agreed and believed that quality over quantity is sometimes the best thing and that he had just mentioned it because some patients want to ‘throw everything’ at it. Chris commented that Dad was ‘Stoic’ when he was discussing the situation with him (a very appropriate choice of words for Dad).
Mum and I went in to see him after we had spoken to Chris… he was still on ward G41 despite having been said he was being moved up to Oncology about 4 times 😀 I spoke briefly to the social worker who is handling Dad’s case and she said she would look to catch up with us tomorrow (Friday) if possible. While we were talking Dad, for the first time, actively sought painkiller medication… Now, for those of you who know my Dad… he’s never been one to take undue medication… getting him to take a panadol almost required a Royal decree… so to see him ask for painkillers, it gave us an indication that he is aware of what is going on and that now he needs to accept any help he can get to make things easier.
The other big first came when we were about to leave. As Dad and Mum hugged he apparently whispered in Mum’s ear… “It’s going to be okay”. This is the first time since his initial diagnosis that Dad has outwardly demonstrated his acknowledgment of Mum’s situation. That’s not to say I am certain that he’s been thinking and worrying about her… but he just hadn’t said anything up until that point.
So now we need to move forward. As much as it grieves Mum and I not to be able to care for Dad at home we had to be practical about a few things. Dad is in that no-mans-land between being able bodied and not… the steroids are chewing through Dad’s muscle reserves and so he will become increasingly frail. One of our biggest fears with him in the house is him falling if I am out or something of the like. The other issue we have is as this progresses and his memory diminishes we may get to the point where Dad becomes a danger to himself left on his own even for the shortest period of time.
As it was we were constantly having to watch where he was, and what he was doing… we had a couple of near misses where Dad had decided to put the dogs tea into cook, but without any water in it… there is a real chance that Dad might start something every day, but end up forgetting what he was doing and walk away leaving an unattended flame or something of the sort. At least if we can get him into a care facility, he will still have freedom and independence, but to a point… he would be less likely to encounter activities that could pose a threat by himself.
We have been given the name of good care facility that is just down in Kelmscott (about 7 kms away from home) that deals with people with a full spectrum of care thanks to our former neighbour Lyn. So we are going to talk to the social worker about that tomorrow. We have spoken to buster who has said that DVA should pick up all costs associated with getting Dad into a placement which is brilliant, because I didn’t know how gobsmacking expensive the bond for one of these places are… it’s bonkers…. and it should be illegal!
This afternoon Dad had a visit from Uncle Shane… and guess what! They have finally moved him up to ward G73!!!! about frickin time! And while Uncle Shane was with Dad, Mum and I had a visit from my cousin Paul, which was really appreciated too!
Anyway… it’s late… my fingers risk freezing to the keyboard and I want to catch up on what I missed last night.
So… again, thanks for your well wishes…